Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019.

BACKGROUND: Dementia palliative care is increasingly subject of research and practice improvement initiatives. AIM: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. DESIGN: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019. SETTING/PARTICIPANTS: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. RESULTS: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased. CONCLUSION: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development.

BACKGROUND: When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base. METHODS: In 2015-2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development. RESULTS: (1) The EAPC domain of "avoiding overly aggressive, burdensome, or futile treatment" was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient. CONCLUSION: A mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.

Implementing Palliative Care Teams Specialized in Dementia in Two Countries: Experiences of Failure and Success.

Much is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models in the Netherlands (2017-2018) and Northern Ireland (2016-2017) contrasting its evaluations. From implementation failure in the Netherlands compared with successful implementation in Northern Ireland, we learn that recognizing roles and competencies among all involved is essential in developing effective partnership relationships. All of this is facilitated by referral before the end of life and offering various training programs and in-patient and out-patient services and therapies to show benefits early.

Truth telling and truthfulness in the care for patients with advanced dementia: an ethnographic study in Dutch nursing homes.

The purpose of this study was to investigate and analyze the moral tension that exists in the care for demented nursing home patients, between the principle of respect for autonomy and the value that is attached to respect for the subjective world of the patient. To this end an ethnographical field study was carried out by two researchers in two Dutch nursing homes. Among the central topics that evolved were the different moral problems that nurses experience concerning truth telling and acting truthfully in relation to demented patients. In situations unrelated to the dementia and its diagnosis, the right to be informed is in principle respected, even if the information is sometimes painful. More specific questions of demented patients about their situation are a regular cause of embarrassment for their carers, who rely on various treatment strategies to deal with such questions. These strategies are often successful. However, when they fail, the nurses are faced with a problem they cannot solve, namely the loss of a common shared world and the resulting unmentionable truth about the diagnosis of dementia, as objective basis and legitimization for their approach to the demented patient. We conclude that in the training and professional support given to nurses, more attention should be paid to (awareness of) the moral problems that arise from this loss of a common shared world, so that they can react to the subjective world of demented patients without feeling that they are deceiving them.

Development and implementation of the Rehabilitation Activities Profile for children: impact on the rehabilitation team.

OBJECTIVE: To describe the changes in functioning of the rehabilitation team induced by the Rehabilitation Activities Profile for children (Children's RAP), an instrument designed to improve interdisciplinary communication in paediatric rehabilitation. DESIGN: Multiple case-study design. SUBJECTS: Seven paediatric rehabilitation teams. INTERVENTION: A two-year project to develop and implement the Children's RAP. DATA COLLECTION: During the project, data were gathered from observations, documents and informal interviews. After the project, formal interviews were held with team members and parents, and a focus group meeting with representatives of the teams was organized. DATA ANALYSIS: Data were analysed by the method of analytic induction. The analysis was checked by an independent researcher. The preliminary results and conclusions were discussed in detail with participating teams. RESULTS: Development and implementation, as well as the changes induced by the project, varied between teams. Changes were observed for individual team members, for the team as a whole and for the children and their parents. However, changes for individual team members occurred relatively quickly, in comparison with the other changes. To achieve an optimal interdisciplinary team approach all changes are necessary. Therefore, we postulated four hierarchical steps in the development of an interdisciplinary team approach: (1) process-oriented approach, (2) result-oriented approach, (3) problem-oriented approach, and (4) interdisciplinary team approach. CONCLUSION: It took a considerable amount of time to achieve the interdisciplinary team approach by implementing the Children's RAP. However, the first steps are not only rewarding in themselves, but also prerequisites for further improvement.

Feeding nursing home patients with severe dementia: a qualitative study.

AIM: To describe the nature of problems nurses face when feeding nursing home patients with severe dementia, and how they deal with these problems. BACKGROUND: In our study on starting or withholding artificial nutrition and hydration for nursing home patients with dementia, we found that many problems in feeding arose (long) before any decision was made about artificial feeding, namely from the first moment a patient needed help with meals. Because 'ordinary feeding' was experienced as a daily recurring problem for nurses, we decided to investigate this within the study. METHODS: Participant observation by two researchers in two Dutch nursing homes. FINDINGS: Nurses interpreted the aversive behaviour of patients differently, and a link between interpretation and responses (stop or continue feeding) was observed. Differences in interpretation with regard to the same patient were observed in nurses in five of the seven units. Only in three units did nurses discuss their different interpretations in an attempt to find out why a patient avoided food and fluids and how to deal with these problems. CONCLUSIONS: Nurses' interpretations of aversive behaviour of patients differ. No definite conclusions can be drawn about the causes of the aversive behaviour observed, because they cannot be verified. We recommend that interpretations of the behaviour of particular patients should be discussed by nurses with physicians, other disciplines and the patient's family to obtain more insight into all its possible causes and to determine together the most likely interpretation and appropriate way in which to deal with the aversive behaviour. This would give nurses more confidence and improve the quality and continuity of care provided. To structure the search for possible causes of aversive behaviour, we developed a framework of causes of aversive behaviour and domains of functioning.